Data protection in biomaterial banks for Parkinson's disease research: The model of GEPARD (Gene bank Parkinson's Disease Germany)
Identifieur interne : 002F14 ( Main/Exploration ); précédent : 002F13; suivant : 002F15Data protection in biomaterial banks for Parkinson's disease research: The model of GEPARD (Gene bank Parkinson's Disease Germany)
Auteurs : Karla Eggert [Allemagne] ; Ullrich Wüllner [Allemagne] ; Gisela Antony [Allemagne] ; Thomas Gasser [Allemagne] ; Bernd Janetzky [Allemagne] ; Christine Klein [Allemagne] ; Ludger Schöls [Allemagne] ; Wolfgang Oertel [Allemagne]Source :
- Movement Disorders [ 0885-3185 ] ; 2007-04-15.
Descripteurs français
- Pascal (Inist)
- Wicri :
- geographic : Allemagne.
- topic : Biomatériau, Documentation.
English descriptors
- KwdEn :
- Biomaterial, Computer Security (ethics), Computer Security (legislation & jurisprudence), Confidentiality (ethics), Confidentiality (legislation & jurisprudence), Databases, Nucleic Acid (ethics), Databases, Nucleic Acid (legislation & jurisprudence), Documentation, Genetic Research (ethics), Genetic Research (legislation & jurisprudence), Genotype, German, German Competence Network on Parkinson's disease, Germany, Informed Consent (ethics), Informed Consent (legislation & jurisprudence), Models, Nervous system diseases, Parkinson Disease (genetics), Parkinson disease, Parkinson's disease, Phenotype, data protection, gene bank, remote data entry system, standardized documentation.
- MESH :
- geographic : Germany.
- ethics : Computer Security, Confidentiality, Databases, Nucleic Acid, Genetic Research, Informed Consent.
- genetics : Parkinson Disease.
- legislation & jurisprudence : Computer Security, Confidentiality, Databases, Nucleic Acid, Genetic Research, Informed Consent.
- Genotype, Phenotype.
Abstract
Parkinson's disease (PD) is the second most common neurodegenerative disease. Although 10 gene loci have been identified to cause a Parkinsonian syndrome, these loci account only for a minority of PD patients. Large, systematic research programs are required to collect, store, and analyze DNA samples and clinical information to support further discovery of additional genetic components of PD or other movement disorders. Such programs facilitate research into the relationship between genotype and phenotype. The German Competence Network on Parkinson's disease (CNP) initiated the Gene Bank Parkinson's Disease Germany (GEPARD), providing an administrative and scientific infrastructure for the storage of DNA and clinical data that are electronically accessible and protective of patient rights. In this article, we offer guidance on how to establish a framework for a clinical genetic data and DNA bank, and describe GEPARD as a model that may be useful to other local, national, and international research groups developing similar programs. © 2006 Movement Disorder Society
Url:
DOI: 10.1002/mds.21331
Affiliations:
- Allemagne
- Bade-Wurtemberg, District de Cologne, District de Dresde, District de Giessen, District de Tübingen, Hesse (Land), Rhénanie-du-Nord-Westphalie, Saxe (Land)
- Bonn, Dresde, Marbourg, Tübingen
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Le document en format XML
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last="Oertel">Wolfgang Oertel</name><affiliation wicri:level="3"><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, Philipps‐University of Marburg, Marburg</wicri:regionArea><placeName><region type="land" nuts="1">Hesse (Land)</region><region type="district" nuts="2">District de Giessen</region><settlement type="city">Marbourg</settlement></placeName></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</title><title level="j" type="abbrev">Mov. Disord.</title><idno type="ISSN">0885-3185</idno><idno type="eISSN">1531-8257</idno><imprint><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><date type="published" when="2007-04-15">2007-04-15</date><biblScope unit="vol">22</biblScope><biblScope unit="issue">5</biblScope><biblScope unit="page" from="611">611</biblScope><biblScope unit="page" to="618">618</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">D3E35E4F796ACAE10A6E05EB3AD4606DA1DD8EC3</idno><idno type="DOI">10.1002/mds.21331</idno><idno type="ArticleID">MDS21331</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Biomaterial</term><term>Computer Security (ethics)</term><term>Computer Security (legislation & jurisprudence)</term><term>Confidentiality (ethics)</term><term>Confidentiality (legislation & jurisprudence)</term><term>Databases, Nucleic Acid (ethics)</term><term>Databases, Nucleic Acid (legislation & jurisprudence)</term><term>Documentation</term><term>Genetic Research (ethics)</term><term>Genetic Research (legislation & jurisprudence)</term><term>Genotype</term><term>German</term><term>German Competence Network on Parkinson's disease</term><term>Germany</term><term>Informed Consent (ethics)</term><term>Informed Consent (legislation & jurisprudence)</term><term>Models</term><term>Nervous system diseases</term><term>Parkinson Disease (genetics)</term><term>Parkinson disease</term><term>Parkinson's disease</term><term>Phenotype</term><term>data protection</term><term>gene bank</term><term>remote data entry system</term><term>standardized documentation</term></keywords><keywords scheme="MESH" type="geographic" xml:lang="en"><term>Germany</term></keywords><keywords scheme="MESH" qualifier="ethics" xml:lang="en"><term>Computer Security</term><term>Confidentiality</term><term>Databases, Nucleic Acid</term><term>Genetic Research</term><term>Informed Consent</term></keywords><keywords scheme="MESH" qualifier="genetics" xml:lang="en"><term>Parkinson Disease</term></keywords><keywords scheme="MESH" qualifier="legislation & jurisprudence" xml:lang="en"><term>Computer Security</term><term>Confidentiality</term><term>Databases, Nucleic Acid</term><term>Genetic Research</term><term>Informed Consent</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Genotype</term><term>Phenotype</term></keywords><keywords scheme="Pascal" xml:lang="fr"><term>Allemagne</term><term>Allemand</term><term>Biomatériau</term><term>Documentation</term><term>Modèle</term><term>Parkinson maladie</term><term>Système nerveux pathologie</term></keywords><keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Allemagne</term></keywords><keywords scheme="Wicri" type="topic" xml:lang="fr"><term>Biomatériau</term><term>Documentation</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Parkinson's disease (PD) is the second most common neurodegenerative disease. Although 10 gene loci have been identified to cause a Parkinsonian syndrome, these loci account only for a minority of PD patients. Large, systematic research programs are required to collect, store, and analyze DNA samples and clinical information to support further discovery of additional genetic components of PD or other movement disorders. Such programs facilitate research into the relationship between genotype and phenotype. The German Competence Network on Parkinson's disease (CNP) initiated the Gene Bank Parkinson's Disease Germany (GEPARD), providing an administrative and scientific infrastructure for the storage of DNA and clinical data that are electronically accessible and protective of patient rights. In this article, we offer guidance on how to establish a framework for a clinical genetic data and DNA bank, and describe GEPARD as a model that may be useful to other local, national, and international research groups developing similar programs. © 2006 Movement Disorder Society</div></front></TEI><affiliations><list><country><li>Allemagne</li></country><region><li>Bade-Wurtemberg</li><li>District de Cologne</li><li>District de Dresde</li><li>District de Giessen</li><li>District de Tübingen</li><li>Hesse (Land)</li><li>Rhénanie-du-Nord-Westphalie</li><li>Saxe (Land)</li></region><settlement><li>Bonn</li><li>Dresde</li><li>Marbourg</li><li>Tübingen</li></settlement></list><tree><country name="Allemagne"><region name="Hesse (Land)"><name sortKey="Eggert, Karla" sort="Eggert, Karla" uniqKey="Eggert K" first="Karla" last="Eggert">Karla Eggert</name></region><name sortKey="Antony, Gisela" sort="Antony, Gisela" uniqKey="Antony G" first="Gisela" last="Antony">Gisela Antony</name><name sortKey="Gasser, Thomas" sort="Gasser, Thomas" uniqKey="Gasser T" first="Thomas" last="Gasser">Thomas Gasser</name><name sortKey="Janetzky, Bernd" sort="Janetzky, Bernd" uniqKey="Janetzky B" first="Bernd" last="Janetzky">Bernd Janetzky</name><name sortKey="Klein, Christine" sort="Klein, Christine" uniqKey="Klein C" first="Christine" last="Klein">Christine Klein</name><name sortKey="Oertel, Wolfgang" sort="Oertel, Wolfgang" uniqKey="Oertel W" first="Wolfgang" last="Oertel">Wolfgang Oertel</name><name sortKey="Schols, Ludger" sort="Schols, Ludger" uniqKey="Schols L" first="Ludger" last="Schöls">Ludger Schöls</name><name sortKey="Wullner, Ullrich" sort="Wullner, Ullrich" uniqKey="Wullner U" first="Ullrich" last="Wüllner">Ullrich Wüllner</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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